Happy Celiac Birthday to Me: 5 Years STRONGER

Wow...I can't believe it has been five years already since I was diagnosed with Celiac Disease. As a way to celebrate making it five years gluten free, I decided I should share a special tribute to it and what I have learned about myself since my diagnosis. To say it has been life changing would be an understatement! I was talking with my Mom today and we discussed how less of a picky eater I actually am since I became gluten free. Odd, because usually Celiacs are classified by society as "picky." Like my favorite Youtube Video about Celiac Disease says, "I have no preferences" anymore.  I decided to declare the day I was diagnosed as my birthday because I never felt like I was truly living until after my diagnosis, which I am going to fully explain later. Honestly, some days it is hard to believe how far I have came since my doctor shared the news. Even though not everyday as a Celiac is rainbows and butterflies, it sure beats the days before my diagnosis. 

When I look back at my life before it was gluten free all I remember is the various forms of pain. Physical, mental, and emotional pain everyday and night. I honestly had no idea how much I was hurting until the symptoms finally went away. Like I told my mom shortly after changing my diet, I felt awake for the first time. For me it was not the physical symptoms that hurt the most, but more of the mental and emotional symptoms. Most of my life all I remember was feeling anxiety and sadness on a daily basis and not knowing why. One moment I felt happy, the next I wanted to throw a chair, and then shortly after I would want to just ball up and cry. With Celiac Disease both my anxiety and sadness was on a whole different level during my teenage years and it only got worse in college. I remember telling my mom I felt CRAZY and that I was CRAWLING OUT OF MY SKIN. I was a Psychology major and had no idea why my emotions were all over the place. Within weeks after changing my diet I felt like a dark cloud that had loomed over me my entire life cleared, and I felt awake because I finally could see the bright light which was LIFE. This reason and euphoric feeling is why I say I did not start living until my diagnosis. 

Has the transition been easy..... absolutely not! I miss the freedom and carefree life that I used to have. I miss partaking in celebrations, traveling without a worry about what I would do for food, and not being a hinderance to my family and friends. However, something like Celiac Disease shows you who your true friends are. Actually it is through my disease that I finally found the strength to decide the type of people I want in my life and how I want people to treat me. Most of my life I would classify myself as a "doormat." I would let people stomp and run over me on a daily basis. Use and abuse me and not say anything. With my disease I have had to learn to speak up for myself and to advocate for my needs. If I don't I could get sick and will be in miserable pain for days. By learning to speak up for myself, and knowing what I want and deserve, my diagnosis has actually given me more self-confidence than I ever had before. It sounds strange, and the change was certainly not overnight, but being diagnosed with a chronic illness gave me a certain admiration within and for myself. I could have easily not listened or taken the doctor's seriously. I could "cheat" on the diet and inflict pain on myself, but I don't. Taking care of myself and choosing to remain strong everyday within the diet is giving myself and body the love and respect it deserves. After all, it was neglected unknowingly for 20 years! 

Looking towards the future I worry about what is left to come and the unknown parts of life with this disease in it. Something that crosses my mind probably the most is will I ever find someone who loves this part of me? Who would sacrifice his food/drink choices to keep me safe? Who would advocate for me because I have days when I just don't want to anymore. I mean dating is complicating enough so might as well add something like Celiac Disease on top of it to make it near impossible right, haha. I think about if I ever do have children, would I feed them a gluten free diet to keep myself safe, or will I raise them on gluten filled products? I think what if they have this disease and are ostracized and made fun of because their body does not know how to process a protein that is so common in food? I think about how mad that would make me as a parent! Children and students are treated horribly in the education system due to food allergies. Both K-12 and Higher Education need to work on this! These are just a few things that cross my mind on a semi daily basis, and it certainly is not the only things.

On my one year mark of being diagnosed with Celiac Disease I got a tattoo in the middle of my upper back. It is the Celiac Awareness Ribbon, the word Stronger, and the date I was diagnosed (10-18-11). I actually did a poll with people who helped, supported, and prayed for me during the months when my health problems was unknown, and I was getting tested for things left and right. They all agreed that the word STRONGER was the best choice. For me I did not really know what this word meant to me and my diagnosis until after the fact. For me it means that I was stronger because I survived my life before it was gluten free. I survived the pain and darkness for twenty years! My disease made me stronger because it helped me learn to live and lean on faith. My diagnosis made me stronger, because it made me develop grit to overcome my illness during a semester of enormous change in college. My disease made me stronger because it showed me that "no" I wasn't a basket case all those years growing up but, I was truly sick. I can now identify what I am truly feeling and why, which doesn't sound like much of an accomplishment but for me it was a life changing. My disease made me stronger because it helped me learn to vocalize and stand up for myself. Finally, my disease made me stronger because I feel like it truly gave my life purpose and meaning. It has given me opportunities I would have never had otherwise, like appearing on News 13 and getting a published article nationally with NACA Campus Activities Programming. 

Life throws you curve balls you never expect. We can't always control them but you CAN control how you respond to them! I am proud of myself for responding to my disease with great stride and strength. Everyday I challenge myself to live and be stronger in all aspects of my life, because I can and this disease has shown me that. I hope that by sharing my story you too will take what life throws your way and do something good with it. You never know what you will learn from it, yourself, or who you will inspire along the way. 

Until next time,

- Jodie

The Dark Side of Celiac Disease

Wow.....Celiac Awareness Month is halfway over and I have not posted at all!

One reason is because life was very eventful the first week of May, but another is because I have been uninspired to write and to raise awareness for some reason.

The truth is that it gets hard to constantly fight this fight. Sometimes I just get really tired of thinking about the challenges we Celiac's face in society. How we have to defend our DISEASE and still do not get the respect we deserve. I get tired of constantly having to think and plan every meal/snack of my life. To constantly advocate for myself at events because people do not think of dietary restrictions. To constantly say no and feel the stares and the shade people send my way. To be in a room of people and feel all alone because I can't take part in the celebration. A lot of people will read that and say, "but you can take part in the celebration without eating the food." You are right I can take part in the celebration, but do you realize how left out I feel? How I feel isolated and like an outcast. How I feel angry, sad, and disappointed that nobody considered me and my dietary needs? A lot of people will think I am snobby or high maintenance for thinking and feeling this way. They will have remarks saying "the world cannot revolve around you", "it is not possible to please everyone", and my favorite is "they didn't know".

The truth is you never fully understand until you are on the other side of the table. You never really get it until you live this life.

I have always prided myself in looking at the positive sides of this disease. Not only did my diagnosis make me feel better but it changed my life COMPLETELY. Even outside of the health arena! It has helped me meet people and accomplish things I never would have otherwise. However, there is the dark and depressing side of having this disease, and I feel really any autoimmune disease.

This dark side of the disease leads you to being an emotional hot mess half the time. When you can not eat the food provided to you. When you debate about eating the gluten containing food just to feel normal again for five minutes. Then six minutes later regretting it for weeks! When you are always remembered as that one annoying customer or person. When people misjudge you as a person because you have a demanding dining request to help control a disease.  How incredibly alone you feel at social gatherings. The emotional roller coaster goes on...and on.....and on. The kicker is that sometimes the emotional roller coaster does not hit you as hard as others. One day you will be fine with the lack of inclusion, and the next day you will be blazing mad about it.

So what can you as a Non-Celiac person do? You can OPEN your mind and eyes to this issue. You can try and see it from our side. You may not fully understand it, but you can at least empathize with it. You can advocate for the inclusion for not just Celiacs but ALL who suffer from Food Allergies at events that involve food. You can make it a point to ask about restrictions instead of waiting to see if someone will tell you about their dietary restriction. BE PROACTIVE!!! Yes it is our responsibility to advocate for our needs, but those that do not suffer from Celiac or a food allergy should do their part in making us feel safe to voice our restrictions. For example, asking about restrictions instead of waiting for the individual to tell you about theirs. When people do not ask about restrictions up front, I automatically do not trust that they will advocate for me fully and I bring food just in case I do not feel safe, or worse they do not provide anything at all. I do not say that to be cynical but it is just how I feel.

 This post is not about getting pitty from people or to offend anybody. It is about showing you the not so positive side of life with Celiac Disease. The depression that can sometimes come when battling an autoimmune disease is real! I was depressed most of high school, partly because of my undiagnosed disease. Now that I have a diagnosis I am certainly not going to let it depress me now, even though some days it is really easy to let it. Instead I try to let my disease fuel my fire and passion for raising awareness. However, I felt it was important and necessary to say that I am human and sometimes I get really tired and fed up with constantly having to advocate for myself. Especially since lately this has been a challenge for me.
I hope to be back sooner rather than later friends. If you have any topics you want me to talk about make sure to submit your thoughts and ideas HERE.

Celiac Awareness Month 2016

When the month of May rolls around most people think of this...

I am a Backstreet Boys over NSync fan so that is why I did not use the typical Justin Timberlake meme haha. 

Even though I love my boy bands, and all the memes I see on Facebook, when May rolls I always think about this....

This year I am celebrating my fifth May as a Celiac. It is hard to believe that five years has already gone by! I was watching my Youtube videos from my first Celiac Awareness month, and it is crazy to see where I was within my diagnosis. Even though I was putting on a brave face during that time I still was trying to accept my life with this disease. Fast forward five years and I feel like I am finally in the "Acceptance" phase of food grief! I figured it would be a cool idea this month to reflect and talk about how I felt going through all of the stages. 

I have a few ideas about what other topics I will discuss this month, but I want to know what YOU want to learn about! So make sure you submit questions via this Google Form. 

Hopefully, life will not get in the way and I will be able to actually post regularly throughout this month. I am not enrolled in school, and not graduating, so I really have no excuse right?!?! 

Look forward to raising awareness with all of you people this month! 

- Jodie 

Celiac Tribute to my HESA Family

Two years ago I started my journey towards earning a Master's degree. In less than 24 hours I will be crossing the stage with 45 amazing individuals. This post is not only a "Thank You" to my HESA family, but also a Celiac confession.

 During our Welcome Month in August of 2013, I remember having a Celiac pitty party. It seemed like all of the events revolved around food, and I just didn't want to be "that girl." I use the saying "that girl" based on a youtube video that I watched during the first year of my diagnosis. You can check it out HERE. It talks about the stigma and labels people place on Celiacs, and how it makes us feel. More than anything it shows that we really do not like being "that girl." I highly recommend checking it out, it kind of shows all the feelings I feel on the daily basis. When starting my HESA journey I did not want my class to think of me as a picky eater, high maintenance, snobby, etc. I wanted them to like me and to just fit in on this brand new journey. You would think as a 22 year old adult I would have been over the whole fitting in phase. What is this high school? 

On a night that I was talking to my mom, and complaining about my celiac disease, she reminded me that this was an oppotunity for me to educate all of my new peers, instead of running away from the opportunity and social engagements.

So "THANK YOU" USC HESA Class of 2015. I know it must get old listening to my Gluten Free rants and request, but I really appreciate you taking the time to listen. You may not realize it but you have helped me come to terms with this disease during these past two years. When I first started here I was still grieving with my past life. Some of the friends I have made in the Celiac Community even called me a "Celiac Baby" due to the fact I was still healing from the emotions that my new lifestyle brought me. However, during these past two years you have shown me patience and kindness with learning about this disease, and I am truly grateful. Even though my diet excludes a lot of food items, you have went out of your way to make me feel included even if I could not indulge in the food aspect of our social gatherings. You have even been willing to try some of my gluten free alternatives like Mac n' Cheese and my Rice Krispee treats, and have even tried to make gluten free items yourself for me to try. Words can never really describe how thankful I am for all of you.

To the USC HESA Class of 2016, I hope you uphold the traditions that we have started implementing at GARP and Orientation. Like letting those with dietary restrictions get their food first and having ingredients listed on food items. I firmly believe it sets our program apart and shows just how family orientated we are at Carolina.

All of my love and appreciation for the whole USC HESA family. I am excited to see where we all end up. Who knows you might meet a student with Celiac Disease in your new role, and you will know how to help!

Always, 

- Jodie

If you have any questions for the blog please submit them HERE.

Life before it was Gluten Free

Commonly when I am sharing my story of how I was diagnosed with Celiac Disease, a lot of people wonder what symptoms I had prior to my diagnosis and for how long. This is an infographic designed by an awesome Celiac Blogger Gluten Dude. It shows the most common symptoms reported by Celiacs prior to their diagnosis.

From an early age I always had stomach problems. I remember complaining to my parents about a stomachache around my belly button when I was younger. I can't tell you an exact time of when my symptoms started because for as long as I could remember I always felt horrible. However I think that my Celiac went full force during high school. However, I thought the way I was feeling was completely normal and was just how the rest of my life would be.

Using the above infographic as a guide, the symptoms listed below are all the symptoms I experienced prior to my diagnosis. I will also put in parenthesis the prevalence of this symptoms on a daily,weekly, or monthly basis.


Oral Symptoms: 
- Mouth sores (Once every few months)

Female Specific:
- N/A

Intestinal: 
- Acid Reflux (Daily)
- Bloating (Daily)
- Constipation (Daily, would alternate with Diarrhea)
- Diarrhea (Daily, would alternate with constipation)
- Gas (Daily)
- Nausea (Daily)
- Stomach Pain (Daily)

Joint/Muscle: 
- Joint pain/stiffness (Daily)
- Leg cramps (Weekly)

Vitamin Deficiencies: 
- N/A

Brain: 
- ADD (Daily)
-Anxiety (Daily)
- Brain Fog (Daily)
- Depression (Only experienced one case of being severely depressed prior to my diagnosis)
- Irritability (Daily)
- Mood Swings (Daily)

Skin:
- Acne (Developed horrible acne in high school)
- Bruising (Would have bruises for no reason as a child)
- Dandruff (Weekly)
- Skin Rashes (This commonly would happen when I would visit a water park)

Miscellaneous: 
- Chronic Fatigue (Daily)
- Dizziness (This was not a constant thing but would hit me really hard)
- GERD (Daily)
- Headaches (Daily)
- Migraines (Once every 3 months)
- Seizures (Experienced during Childhood)
- Sleeping issues (Always had trouble sleeping growing up)

As you see I experienced a lot of symptoms prior to being diagnosed.  Some Celiac's have experienced more symptoms than me, others have experienced less. When I went gluten free all of these symptoms were either eliminated or greatly reduced. I even remember telling my mom a few weeks into my gluten free lifestyle that I felt awake for the first time in my whole life. There is a saying in the Celiac Community that life starts after going gluten free. For me this was incredibly true! I have felt better the past four years than I did the first twenty. So if you are experiencing any of the above symptoms think about getting tested, because you too can live life wide awake like me.

Until next time,

- Jodie

Submit questions/topics for the blog HERE.

Celiac Awareness Month 2015

 Wow I can't believe it is May already!! Where has the year 2015 gone?

This is a very special month for me because I will be graduating from the University of South Carolina with my Master's Degree! Earning a Master's has been a life long dream of mine, and it is amazing that I am days from achieving it.

This month marks the fourth May of me being diagnosed with Celiac Disease. When you put that into perspective that is the length of High School! Even though it has been four years I still have ups and downs in regards to this disease. I try my hardest to joke about it with my family, friends, and co-workers because I know it is equally hard for them as it is for me. It also sometimes takes the edge off of it.

Now, in previous years I have been very inconsistent when it comes to posting throughout the month of May. Simply because life happens! So I am more than likely not going to post everyday, unless people really want me to talk about something in particular.

This year I wanted to gear my blog more to the audience! What do you want to learn about? What are questions that you have always wanted to ask but never felt comfortable doing so? I have created a Google Form where you can submit request and questions throughout the month. Request are bigger questions that I can dedicate a whole post to, questions are smaller items that I can simply answer in a few sentences.

So welcome to my blog and I hope we get to discuss lots throughout this month!

- Jodie

Celiac Disease vs. Gluten Intolerance

The gluten free jungle can be kind of confusing for most people. You hear Celiac Disease and Gluten Intolerance but they are not the same thing.

Celiac Disease: Is an autoimmune disease. Gluten is ingested and it damages the small intestine. This damage can lead to malabsorption of nutrients, thus making the person very ill inside and out. It is a disease that is both an autoimmune response and malabsorption.

Gluten Intolerance: Is when there is a reaction to gluten but does not cause damage in the intestinal tract. They are able to absorb the nutrients but have some GI problems as well.

There is a difference between the two, which can affect how that individual lives in terms of the gluten free diet.

More on that tomorrow...

- Jodie